Things start to get hairy - or hairless

    As if life wasn't fun enough with a large family, house in the middle of a remodel, kids in 3 schools, afterschool and church activities, etc. I get to add cancer to the mix. Life always has a curve ball or five to throw our way it seems. We have landed in big changes of life that you aren't "supposed" to do at the same time often in our marriage, so why not do cancer mid remodel. 

    For those who don't know, we are adding another room in the top half of a two story room in our house. Pre-diagnosis, Husband, myself and some Helpers had worked together and put in everything necessary for the floor. We had the beams and decking down and were ready to move into wiring lighting for the lower floor room and putting in some A/C ducting. We decided to add a half wall along the top of the stairs that we will build book shelves against to make as good a use of the space as we can. In the end we wanted to wall off one part of the current open loft area and make another bedroom and storage room. Then the new floor would be the new common area of the upstairs. We were excited but things were going slow.

    Then Cancer. We called in reinforcements to help get things taken care of that we don't have time or energy for. We are at a point where it is starting to feel like things are getting to be what I want them to despite Cancer messing with things.

    We are also hitting the point in the school year where I feel like things get all spun up again with activities, needs of random items for projects or field trips. We get really busy in the Spring. I am the one who tends to take on getting kids to activities, and supporting and volunteering wherever help is needed. It's a full-time job and I am really sad that this will mean I miss out on some of the things I love to do. I love to work the bookfair at our elementary, I love helping kids figure out how to get the most bang for their buck. I love seeing familiar faces and helping them find a new favorite book or sharing with the 5th graders how I have read most of the books written for their age level because sometimes I am pretty sure I'm only 12. I will miss doing things with our Girl Scouts and helping them achieve new things. I will miss helping to sit and be with the kids on field trips. Setting up and planting the produce garden, hunting all over town for the next new plant to add to the flower beds. I know there are ways I can help with some of these things, but I'm sad I won't be able to do a lot of them in the same way as I would other years. Mom said with everything going on it is like we already had a tornado going in life and then Cancer added a hurricane. So, let's pray to keep it that way until things calm down and pray to not have any added any tsunami's.

    There are a lot of things I am going to miss out on this season. The important things in life remain - I am surrounded by friends and family who love me. We have a strong church family and I am blessed immeasurably by their love and service. I have a Husband who will hold my hand when I want to cry and laugh at the many many dumb puns and jokes I come up with each day. I have Kids who love me and are always willing to share a snuggle or smile with me. I have a Mom who has given up much of her time to be here to help keep our family boat from rocking too hard. I have my faith and my love of God. 

    Things are hard, things are different, but they are good.

    Today we worked on making some cards using some supplies Sister sent me as a prize in the mail. It was fun to have Kids and Mom focus on something fun with me. They aren't done but we made progress even if it got hairy for a while.

    Speaking of hairy, I am starting to lose my hair. I haven't noticed a lot of thinning in my scalp yet, but I am sure it's coming as I have seen hair come out in clumps from my nose (yes, girls have nose hair too even if we don't talk about it much) and eyelashes. 

    While we are on this topic, why was I not allowed to tic a box that said I would like my leg hair and armpit hair to fall out first so I could ditch shaving sooner rather than later? I mean this girl was dreaming that I could skip shaving before I lost all the hair - I was dreaming so much I already threw out my razor. I'm ready for that to start...any day now. 

Tomorrow will mark round 2 of chemo.

Setting up for growth in the right areas

I don't like chemo, but it has a purpose. It has the purpose of killing off the right things in order for the better things to remain and grow. The chemo is a bit of a rough hand type tool for getting in and doing detailed work. It will kill of quick dividing cells, of which cancer is one, but it will also kill off others. That is where many of the harsh side effects of chemo come into play. Doctors make decisions for which drugs to use by tailoring the treatment to your specific type of cancer cells to try and take them out. The problem is that there is no magic magnet inside of a cancerous tumor that pulls the chemo drugs into just that place. 

In my mind it is like using a large snow shovel to try and remove the weeds from a newly tilled and sprouted garden. You can absolutely take out all of the weeds with that shovel. But trying to take only weeds and not some of the seedlings with them would be nearly impossible. In this situation you would need to take out what you could and come back later for more detailed work. You are also counting on seeds that haven't yet sprouted doing their job and coming back to fill in all the holes you made by scraping off their earlier friends. 

In theory you would have removed the weeds and if you continue to pay attention to your garden by weeding individual plants out later on (like radiation and surgery), replanting where necessary, watering and fertilizing the soil (recovery and natural cell regeneration) you will have a flourishing oasis later on. 

I am trying to be mindful of this as I look back on how junky I felt after the last round of chemo and how junky I will feel with the next round. The nausea meds will need adjusting cause they worked but knocked me silly. New things need to be added to supplement and fix other symptoms, more changes and more of me feeling like I will never feel balanced again. It's overwhelming and sometimes I have cried trying to think about how many more rounds of chemo and medicine I have ahead. But if I can keep in mind that it will all be worth it in the end I can keep going. 

My first phase of chemo will have 4 doses - one every other week (we already have 1 down), the second phase will have around 12 weekly doses. The 20 doses feels like a lot so I'm focusing on getting through the first 4 for now.

I was thinking too about how I said in a post before that my pride was taking a hit. Maybe that is a good thing too. It feels like maybe I'm being divinely plowed and prepared for some new growth in the right areas. Maybe I can come out of this a better person - someone who is more loving, understanding, patient, and a heck of a lot less prideful than I went into it. Maybe I'll come out a little more like Jesus - it can't hurt to try. 

Last thing for today - thank you for your love and prayers. When I can't seem to think or reply to all of the messages because of where I am at in the cycle, know that I do read them and they keep me going. 

I had some sweet Friends help me to get my hair chopped last week in preparation for chemo starting so it wouldn't feel quite so traumatic when it starts to go. I don't go to the salon, but I wanted someone else to do the chopping this time. I was so hesitant because while I've always wondered what a pixie cut would look like on me, I didn't plan to get there for a very long time. I went to the hair appointment that one of the Friends found me that was in a private salon booth and felt so well taken care of - when it was time to go, my Friend had already paid the bill that I was dreading paying because of what it meant. So, Friends who helped me look for an appointment and found ways to help occupy kids this week, THANK YOU from the bottom of my heart. Sweet FRIEND who paid for that haircut so I didn't have to, thank you. That was a gift at just the right time that this cancer patient didn't know she needed until it happened. And to the awesome hairstylist, thank you for showing compassion and helping me laugh and find joy in an otherwise hard experience.

Feeling reactive

Last week I had my first round of chemotherapy...

It was as not fun as they say. 10 out of 10 I do not recommend it. 

The chemotherapy course I am taking is called AC-T. The medicines are given in two phases. The first phase I am given the AC drugs and the second will be the T or Taxol. For the first phase, one of the drugs they are using has the nickname "Red Devil." It is nicknamed that because it looks like red koolaid in the syringe before they administer it, and for some of it's side effects. It is the chemo that will start my hairloss, it turns bodily fluids red and toxic. My oncologist (we will henceforth call him DR.O) didn't say that the name of the drug was "red devil" when discussing the plan of treatment, he used the actual name of the drug. After learning the medicines I would be on I had researched and learned as much as I could before my first chemotherapy appointment to help make sure I was as prepared as I could be for what was coming.

I had been unable to sleep well the previous two nights with anxiety over what was coming. I had already talked to Dr.O about dealing with so much anxiety and that I felt like we needed to just rip the bandaid off and get started to help me to stop overthinking things. 

As we walked in for treatment, I looked at the multiple bays with numerous chairs for people receiving treatment. It is heartbreaking to think that there are that many people and yet we haven't stopped all cancers yet. I selected my chair for the day and settled in. Then I realized - I am one of those patients. One other thing that helped make this whole process feel real was when Nurse showed me the list of pre-chemo meds and chemotherapy drugs I would be given. She had a copy for me to keep to help me know what drugs I had been given. As she went over the list she wrote in what the drugs were for or what they do. Then we got to the doxorubicin(Adriamycin) and she wrote "red devil chemo." It sunk the pit of my stomach like I was sitting on a precipice peering down as I was about to fall a great distance. Then we were off, and my stomach moved up into my throat as we started the plunge into the administration of the medications.

Nurse, got my port ready and was able to access it for the IV medicines. Nurse started the first bag of pre-chemo medicine, and I remembered a prompting I had earlier that morning. I knew there would be an allergic reaction to one of the medicines - I was apocalyptic thinking that it would be the chemo drug and we would have to start over, but I was reassured that it would be ok. When the second bag of IV medicine was hung, Nurse started the drip and I took a deep breath felt ready to get on with things. Nurse walked away, Husband started to read and I began to work on a book I was gifted by a friend. I noticed I was having a hard time focusing on the words on the page, then it felt like my anxiety was attacking my chest. Things were so tight. One breath, two, by the third breath I looked up and saw stars and knew I was in trouble. I reached arduously for the call button and was feeling myself start to black out. My hand hit the button as Husband looked up to see what I was doing. Nurse and another support nurse ran over and immediately knew I was in need of help. They were able to get the medicine stopped, counteract what was happening and get me breathing freely again quickly. 

I had not expected things to go that fast or so soon in the treatment but was glad that they were quick to respond. Dr.O, Nurse and Pharmacy worked to find an alternative drug that I wouldn't have a reaction to. I tried to shake the feeling of just evading death and waited for the next step to be explained. When the new med was procured and approved we started the timers once again and finished the treatment without incident. 

Ports but not the fun ones and labs

My cancer is positive for both female hormones. It means that it is feeding on them and using them to grow. 

I have had 3 sites biopsied, multiple mammograms, 2 MRI procedures, a PET scan, port placement, EKG, blood work and loads of appointments to try and learn all that we can about the cancer.

The kids say because the type of cancer I have is called invasive ductal that it means it's like an alien invader and we need to get the aliens out of me.

There have been many visitors, texts and calls from people reaching out to offer help, support, supplies, meals, cookies, plants and love. It has truly helped me to brace for what comes next knowing I have so many at my back cheering and helping to push and keep me going as we head into the next turn of the ride.

I have tried to spend time snuggling the girls and resting the best I can. 

I love ports, but just not ones that they put in my body. I have had two different picc lines in the past, and they were not fun. My surgeon assures me that this port will be much less annoying than the picc lines and neck IVs were to deal with. Actually getting my port placed was not my favorite. I was glad for the medically induced nap while they did the work of placing and testing it. When I woke up and was sent home, I had a lot to say apparently and my family thought it was a lot of fun to try and have a conversation with me. I'm glad that I could make people laugh.

Since getting past the haze of the medicines, I hate the sensation of something sitting there beneath the skin near my collar bone. The feel of something foreign and stiff where the skin was once soft and supple is a sensation I could do without. Turning my head I feel the pull of it beneath my skin and have to remind myself that I didn't kink my neck or sleep funny and that this new sensation will be with me for a while as the swelling goes down and my brain becomes accustomed to the new sensory input.

I have so many bruises. Bruises from biopsies, bruises from blood draws and IVs. Bruises from the port being placed. There are so many bruises and scabs where I have been damaged.

The hardest bruise right now is the one sitting right square on top of my pride. I like to be independent and strong (in every way). I like to take care of what I need to and not have to ask for help. I like to move furniture when I want and not worry about whether it is too heavy for me to lift. I like to move boxes and totes and reorganize whenever the whim strikes me. I like to make meals and be the one helping others. I like to serve not be served. This cancer journey is definitely a fight - right now it feels like the fight with myself is a bigger one. I have often thought that physical things are hard for me, but not as hard as the mental/emotional ones are to deal with.

The start of a new ride

The last few months have felt like a rollercoaster ride. There have been highs, and lows and scary parts that make me clench my fists and teeth and hope that it's over soon. I thought that we were done with rollercoasters, but here we are at the start of another ride.

 

I have invasive ductal breast cancer. I received my diagnosis over the phone on Valentine's day. It was found in my left breast and the lymph nodes nearby. I am not 40 yet so this was somewhat surprising. We have been working with my team of doctors to clarify and get all the information that we can about my diagnosis. 

I have had biopsies of some of the tumors. There have been and will be more appointments to make sure that we have all of the information we can going into treating my cancer. The plan is to start chemotherapy soon.